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Topic: my firrst real med question (Read 942 times) |
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pfunk
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Okay guys. My docs have me on a whole slew of junk and I know that it is probanly not good to be mixing it all together. So I'm posting pretty much a list of the prescriptions that I have and the list of vtiamins that I keep stocked in the cabinet. I would appreciate any input, suggestions and/or "hey dumbass you've had CH for 20+ years you know good and well you shoudn't be takking that." Here goes:
Imitrex(injectibles and 100mg tablets), topomax(2nd week now 75mg/day), elavil(75mg/day),oxygen(per HA), Ambien(1/2 or 1 pill at bedtime for insomnia). As well I always keep the fridge fully stocked witha case of H2O and a few Pepsis in case I get a caffeine HA. These are all the meds the I currently take on a regular basis.
Others that I have but either don't take or only take when absolutely nothing else works are:
MS Contin(only take if I have no other options- doc only gives 5 and I don't like taking them), vicodin(other doc seems to think that he needs to write a prescription for pain killers every time I see him even after I've told him that painkillers don't work 500 times), melatonin(just bought today and haven't started yet because I wanted to talk to you guy and my docs about taking it rather than the ambien). I took verapamil and depakote for several years wtih no success so my pain specialist decided to switch me to the elavil and topomax because he seemed to believe that he had seen higher succes with "top."
Anyway, taht's what I'm dealing with. Anything that you tinhk I should delete or even think that I might add to my daily routine would be a great help to me. Thanks!LYG
Pfunk 
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FramCire
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Re: my firrst real med question
« Reply #1 on: Feb 3rd, 2006, 11:17pm » |
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I don't know Elavil at all.
I suggest taking 9 mg of melatonin 1 hr before badtime because I read it in an article and I am sleeping better since I started it. The first few days were worse and then they got better.
I also take 480 mg of Verapomil (did you get this high or higher with your dose? Orig my Dr had me at a much lower dose).
As for Topomax, it didn't work well for me and my Dr (a headache specialist) says he doesn't think it works all that great. It has some annoying side effects pertaining to cognitive abilities. I hated being on it. I was at 100 mgs per day (I suggest taking it at night). I am surprised you are at 75 mgs in week 2. For soome reason I thought it was custmoary to start at 25 and go up 25 mg per week to 100. (Im not a DR!!!! so what do I know). Anyway, I hope it works for you. I hear people have success with it, but I didn't and I hated being on it.
Anyway, if Verapomil (at a high enough dose) wasn't effective, my Dr wants to go other routes before Topomax. I hope your experience with it is better than mine.
Anyway, my treatment is 9 mg of Melatonin and 240 mg of Verapomil at night and 240 mg of verapomil in the morning. O2 when needed and Maxalt (dissolvable) or imitrex injection for bad headaches. I haven't used Maxalt or Imitrex since i went to Melatonin.
Just my .02 cents. None of it is gospel, as we all react to different things.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Squanto
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Re: my firrst real med question
« Reply #2 on: Feb 4th, 2006, 7:20am » |
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pfunk,
try going to "checkmymeds.com"
http://tinyurl.com/ccwc3
that site can compare your present meds ( and any that you may get in the future) for interactions and side-effects.
Squanto
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Karla
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Re: my firrst real med question
« Reply #3 on: Feb 4th, 2006, 11:44am » |
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There have been a few people here that have reported sucess with elavil. I would try it and see what happens. Everyones different. Good luck!
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Karla
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marlinsfan
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Re: my firrst real med question
« Reply #4 on: Feb 8th, 2006, 2:13pm » |
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on Feb 3rd, 2006, 11:17pm, FramCire wrote:| I suggest taking 9 mg of melatonin 1 hr before badtime |
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Don't mix the melatonin with the Ambien if you any plans to do anything at all the next day.
Vicodin does nothing for clusters. I think it actually triggered my last cycle after back surgery.
Watch what you eat. You should know after 20 yrs what your triggers are. Mine include alcochol, equal (aspartame), nuts, milk chocolate, tomato and OJ.
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Richr8
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What works for me..,
« Reply #5 on: Feb 8th, 2006, 8:45pm » |
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...not that I have all the answers, or that I am done looking.
Abort 02, Imitrex
To break cycle 60 mg Pred 4-5 days then taper
Verapamil 480 mg
Topamax-Tried it (100mg), made me an absolute complete mental invalid and seemed to have no impact on CH. I don't get it. I could not get off of it fast enough and when I did I was amazed how quickly my faculties returned. Works for some from what I've read, but not me and had serious psychological side effects in my opinion.
Narcotics -Percoset, Vicoden, no place in the CH regimen unless you want to get high in between attacks.
Sleeping aids (while on pred taper)
Nothing (no aid) - less than 3 hrs per day
Ambien-No effect Less than 3 hrs per day
Tamazipam-No effect less than 3 hrs per day
Lorazipam-No effect less than 3 hrs per day
Lunesta-No effect less than 3 hrs per day
Melatonin - 6mg brought me to 6-8hrs sleep per night. I would experience mild depression after waking that would soon pass. Melatonin was an absolute miracle find for me and I found it here. My Neuro also approved of it's use with the pred taper.
Anyway, Hope you find something here useful, and many pf days and nights.
rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Lobster
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Re: my firrst real med question
« Reply #6 on: Feb 9th, 2006, 1:09am » |
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Topa works for me, but be ready for the side effects. More people than not here seem to give up on Topa due to the nasty sides.
My main side effects:
- I cannot do simple math in my head
- Beer and soda taste like shit, along with other random foods
- Plus 'mental slowing' as my MD puts it... I call it 'I get dumb as a bag of hammers'.
Check here.
http://www.crazymeds.org/topamax.html
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pfunk
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Re: my firrst real med question
« Reply #7 on: Feb 9th, 2006, 1:37am » |
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Rock_L-
Thanks for the line on Top dude. I had had success with it in the past before my last bout with remission. I was away for about a year and a half where I took almost no meds at all. And trust me from this point forward, I will always be taking some sort of meds to keep them away whether I'm in cycle or not. But once again, I seem to b seeing good things from it and the most interesting side effect that you mentioned that I get is the soda thing. I have recently stopped drinking alcohol so the taste of beer is not much of an issue for me anymore but I do drink tons of soda and you're right, they taste horrible. As a matter of fact the only things that seem to keep their normal tastes for me are my bottled water and my apple juice. I am a salt freak too and I have even stopped putting salt on my food before I eat because it really doesn'r make it taste any better or different for me now. But it that's the only price I have to pay for that medicine working even a little bit, so be it  Peace out bro! Thanks for the vine.
Pfunk
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Dragnlance
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Re: my firrst real med question
« Reply #8 on: Feb 9th, 2006, 12:55pm » |
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The only thing Topo did for me was bring my IQ down to "Moron". I can get in a car wreck and do that for free, so no need to give my money to the pharm companies. I hope it works for you. I was on it 6 months with no change in the number or size of the monster hits.
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Kris_in_SJ
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Re: my firrst real med question
« Reply #9 on: Feb 9th, 2006, 8:03pm » |
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Hey pfunk,
Welcome - quite a list there.
First, I'd encourage you not to stay on meds needlessly between cycles. If you're not in pain, why do it? I stayed on lower doses of my preventatives for awhile - did nothing to prevent the next cycle from starting.
Second, if taking Trex injections, avoid the pills during the same 24 hr. period. Don't mix Tryptans - even the same one in different form. It can have disastrous consequences. Use O2 whenever possible as a first defense.
Third, many here have had minimal luck with sleeping pills, but great luck with 9mg of Melatonin a night. One of the reasons it works so well is that it helps increase Seratonin levels - something most clusterheads are short of. Do not mix it with sleeping pills.
As you already know - avoid narcotics in all forms. They just cause rebounds.
I can't speak to the Topomax - never took it. It has a pretty bad rep for decreasing mental function, but helps some. If I were you, I might be tempted to look up any possible interactions between the Topomax and Elavil, which is often prescribed for intractable pain.
Quite a cocktail, my friend. Good luck and keep us informed.
Kris
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shenke
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Re: my firrst real med question
« Reply #10 on: Feb 9th, 2006, 10:40pm » |
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I too was on topamax, hated it...hated it...hated it. Made me crazy and couldn't function. Did nothing for my CH. Was so glad to get off it. Have only been off now for three days ( had to taper off), and can tell a big difference.
My doc also has me on lithium, and it hasn't helped either. Having at least two attacks at night. Have imitrex though...
Going to try melatonin...just afraid it might make my beast come during the days instead  .
Go back to doc. this next week, will probable start me on verapamil, this is day 22 for me with continuous CH during the PM.
Hate to sleep........
Sheila
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djpaynesr
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Re: my firrst real med question
« Reply #11 on: Feb 10th, 2006, 1:54pm » |
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Sorry to hear that Sheila.
I hope your MD can hook you up with meds that start working
Have you tried DHE? It stings like the dickens when you inject it, similar to a bee sting, but the 1/2 life can be up to 8 hours.
The downsides are:
1. It make take longer for it to work (20-25 minutes vs. 7 min with Imitrex).
2. If it doesn't work make sure you have O2 on hand because you cant take Imitrex behind it. You may, however, be able to take some Amerge. CHECK WITH YOUR DOCTOR.
I had never heard of DHE before my hospitalization last Feb. but I have found it to be an adequate replacement for Trex.
I wish I could help with the preventative stuff. I haven't found anything that can prevent mine.
Wishing you PFDAN Dave
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tex_leger
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Re: my firrst real med question
« Reply #12 on: Feb 17th, 2006, 11:01am » |
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I always come back when I hurt, someday I'll come back and tell you I am pf, anyway about melatonin I am taking 15 mg when I fell a hit coming on. I tapered off pred. and was on 15 mg of melatonin a day till i finished the pred. I was pf for about a week then I would get one hit at 8pm about a kip 2 and for about 15min. I am now up to 4 or 5 hits a night, not good but better then a kip 10 for 5 hr.s. I take a couple of tylenol with the melatonin. I was on kudzu and that worked great for a week, I wanted to cry when it stopped, I'm going to start it again with the melatonin hoping it will work again, if it dosn't work I'll look at the seeds. good luck Tex
p.s. I was on lithium with the pred. and after a while it gave me the shakes so bad I couldn't drink a glass of water without spilling it. DR. took me off real fast.
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TxBasslady
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Re: my firrst real med question
« Reply #13 on: Feb 17th, 2006, 3:10pm » |
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The pain of CH is such that we reach a point where we will ingest anything that we think will make the pain go away.
The narcotic meds seem to be the root of rebound ha's.
It would be great if we all could take just 1 thing to stop this horror we live with, but it's simply not possible. We are all so different....and it seems nothing works the same for everyone.
I found extended relief using the Kudzu. I have not taken a triptan since Jan 12, 2005. I have now tapered off the Kudzu, and use only the o2. I also take a multivitamin, CoQ10 (100mg perday), and B-50 complex each day.
I've taken 2 Prednisone tapers in the past to break a cycle. First taper gave me 197 pf days, 2nd only gave me 42 before the CH returned. Some folks only get pf time till the taper ends...and then the CH returns, but for me, it seemed to be quite different.
Lots of luck to you with the meds. Let us know how things are going.
PF vibes,
Jean
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